The contribution of the foundation by Michèle Fusselier

My professional development, after my studies in pharmacy and basic biochemical sciences, supported with a state thesis, drove me to practice as a pharmacist, first as a Master of conferences on a faculty, and later in the pharmaceutical industry.

It was covered in several emerging points such as:

• An approach towards knowledge of bacterial endotoxins of (-) gram germs followed by the introduction to the Pharmacopeia of a detection test of the same endotoxins
• Study on processes of sterilization and their validation
• Study on metabolism leading to better tackle needs which do not cure on their own, at the level of electrolytic equilibrium
• Study on free oxygen radicals and means of biological protection
• Studies on metabolism of vitamins and oligo-elements

These professional elements led me to take part in various intellectual societies: Pharmacy society, member of the Pharmacopeia, French society for enteral and parenteral nutrition, currently: Committee for protection of persons for biomedical research

On the personal level I closely accompanied an ALS attack, and afterwards at the request of Pr. Meininger, I committed myself to the ARS Association, presiding from 2000 to 2007. This taste for research led me to try to understand this disease. The results guided me in January 2009 to propose the site, wishing thus to record these experiences in order to help those living in a chaotic journey, as hope must never abandon. The FTL is a supplementary and indispensable step for a larger vision in search of causes of ALS and its possible treatment. For me, it is a strong commitment.

ALS today:

Severe and frequent, it is an adult disease, as common as Parkinson’s disease and Multiple Sclerosis.

It causes the patient to become the helpless and conscious observer of the deterioration of his body. This is indeed a neurodegenerative disease, constantly evolving, leading patients to total dependence due to atrophy of the muscles attached to bones. By itself this summary allows a glimpse at the procession of disabilities that result: quadriplegia, inability to swallow, inability to speak, difficulty breathing, accompanied, usually a total compliance for intellectual faculties.

4 new cases are diagnosed each day

But, despite the frequency of the disease, the number of patients does not exceed, in France, 6500. This explains the lack of desire of pharmaceutical companies for research which proves difficult, long, and therefore expensive.

Knowledge of disturbed functions and their impact throughout the course of the disease are well known. The triggers are themselves to date ignored. Many clinical trials focusing on multiple disturbances observed have been attempted, without success.

The current situation

A retrospective vision allows a better understanding

Faced with these failures, in therapeutic cases, given the difficulties faced by these patients and families – because it is indeed a disease for 2 – and facing the understandable lack of experience worldwide caring for this disease, it appeared useful to sensitize governments to the establishment of reference centers spread across the country to end a current wandering diagnosis, which is highly penalizing.

In 2003, thanks to the strong involvement of some involved with politics and the sustained involvement by the effective mobilization of patients themselves and their families, 17 referral centers across the country were filled. Therefore each center has permanent basis medical, paramedical, and social personnel trained.

This has significantly changed the therapeutic landscape, despite the absence of effective drugs. Patients now have the identity card of their disease.

This colossal advance, widely supported by all neurologists in charge of ALS patients, has contributed to a more comfortable managing the time as it elapses. But the actual daily assistance, through concrete actions in the face of the silence of concerned agencies, remains a vast project whose gap is widening more and more every day.

Nevertheless, this advance did not lead to the response expected

The search for a curative drug (for neurological diseases, it is the domain of the exception) or the one capable of stopping the evolution and thus allow the patient to start a new life – relied on the existing handicaps then considered final – is more than ever at the heart of concerns.

The funding here and there was inevitably modest and partially provided by the associations, and was not able to provide an answer to this difficult question, although a range of work has contributed to clearing up the pathophysiology, i.e. knowledge about disorders caused by the disease.

Creating a foundation dedicated to this disease and aiming to expand and unite the skills field by giving it a European dimension first, were needed urgently in response to the setbacks suffered in research.

Indeed, faced with repeated failures of these attempts meant to correct such an easily spotted disorder, the necessity of programs of fundamental research or the sort applied to therapeutics became absolutely pertinent in the spirit of finding the responsible element of this cascade of malfunctions more or less correlated : apoptosis, oxidative stress, inflammation, the role of glutamate, deactivated mitochondria, nervous or immune cells not playing their protective roles, of support, of supplying nutritional elements, etc.

In June 2008, the Thierry Latran Foundation is born.

Founded for 10 years, the FTL, under the aegis of the Fondation de France, is recognized as a charity. An executive committee with three separate colleges, one each for the founders, scientists, and qualified persons, ensures the functioning of the Foundation. This committee is assisted by a Scientific Advisory Board consisting of recognized European experts under the chairmanship of its Belgian representative.

In the first year, the FTL collected €1 million to fund 8 innovative projects. A second call for proposals was launched in November 2009; € 300,000 of the million Euros collected will be dedicated to research on stem cells.

A foundation targeting this disease, with federated and innovative projects, supported by basic research or applied to the European or even international therapy was indeed the missing link in this highly significant life trajectory.

This is why the FTL in concept is a great initiative filling a resounding lack of money and ideas for research which has been hitherto in its infancy.

The access of international and European researchers to diverse centers of interest, the selection of fundamental projects and research applied to therapeutics, and your commitment as a well-informed donor are the 3 incontestable pillars of a solid and dynamic structure towards which these long-lived gifts head with a life full of hope.
Your commitment and your gifts – which are used solely for reviewed research under total transparency – are decisive for future projects. An annual ‘’closed’’ colloquium will present the results of a year of work by researchers with the ‘’pros’’ and also the stumbling blocks encountered which delayed the final result.

Research is thus performed that it proceeds from observations at the origin of the hypothesis confirmed or rejected later on, but always involving a readjustment.

Research is also peculiar in the sense that a result which is negative in its main objective is always a precious step to gaining a better understanding, and thus allowing a valuable reorientation towards a chosen path.

Because all, one day, will be concerned by this illness affecting a loved one, a friend, an acquaintance…

Because it is an illness falsely rare, leading to disinterest by pharmaceutical companies,

Because research must position itself starting with gains, in order to identify the cause,

the creation of the Thierry Latran Foundation, with your indispensable support, must be able to bring an answer to these questions and thus offer a hope of life to those affected by ALS.